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Getting Along

Raising children, teaching them how to get along with others, provides an interesting perspective. One of my kids in particular gets focused on demanding his rights. I have the right… (Yep. You do. How’s that working out for you?) That child is slowly learning (with lots of teaching and lots of practice) that life is a lot more pleasant if he sometimes gives up his rights and works amicably with others. The more he does it, he’s discovering that when he doesn’t insist on always getting what he has the right to have, that others are sometimes willing to give up their rights to help him out, too.

From what I’ve read in a comment thread recently, that’s a lesson that will stand him in good stead his whole life long, and one that too many people still need to learn.

As a person who’s been unwillingly thrust into a role I never signed on for, I’ve learned a ton about our healthcare system that I never dreamed of a few short years ago. I know that the things I’ve learned are just the tip of the iceberg, so when a doctor is willing to give tips to patients on how to make the most of medical encounters, I’m all ears. Recently, in A Letter to Patients With Chronic Disease, Dr. Rob said,

There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.

Pretty basic, really, but fleshed out to be a powerful post. When I first read it there were no comments. I wanted to think about my response, so left the blog open in my browser to return to later.

Life happens (quite a bit recently), and when I finally got back to it there were tons of responses. And I was shocked. Not that there were comments, but that so many people were upset about the post. Because, you see, I don’t think this gives different criteria for people with chronic diseases than for healthy people. I thought this sounded like a pretty basic reminder for everyone.

Don’t come on too strong because you only get one chance to make a first impression.
So… pick what you want that impression to be. Be aware of how specific behaviors are likely to be interpreted and decide if that’s how you want to present yourself.

And so on. This is basic stuff, and some people were offended. If that’s how very many people with chronic illnesses are, it’s no wonder that there are doctors who would rather not deal with us. Nobody enjoys being around people who walk around with a chip on their shoulder.

I hope I’m not like that — and that I never get that way. I realize that I’ve been really lucky to get terrific doctors, and sometimes wonder if I’d feel differently if I’d had numerous bad experiences seeking medical care. Maybe. But part of me wonders if sometimes people don’t create their own bad luck. I don’t really know, but if I’d had more than a handful of bad experiences, I’d start to think maybe the problem wasn’t all those bad doctors after all, but was perhaps staring back at me from my mirror every morning.

But I don’t know, because I’ve been blessed with terrific doctors. My rheumy writes a report to my PCP every time she sees me so both doctors know what the plan is. If I need to call either doctors’ office, the nurse calls me back (usually the same day). If someone in my family is sick and needs to be seen, they work us in — my PCP holds spaces in his schedule for same-day issues so that he can work people in. My family physician has gone above and beyond the call of duty in providing exemplary medical care for me and my family.

So I, for one, am very happy to read Dr. Rob’s tips. I’d do anything I could to make things easier on my doctor. If it gets me help more easily than I’ve gotten it in the past… well, I honestly don’t see how that would be possible, but I’ll file this post away for the sad day that my doctor retires and I’m stuck searching for a new one.

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14 thoughts on “Getting Along”

I appreciate this. I have to say that the responses have me questioning my own reality – am I really being paternalistic and non-feeling? I wrote it with as much self-effacement as possible, but some of the responses make it sound like I am not seeing my own slanted position (something I try very hard to do).

I think you assessment, that some of these folks can’t handle that I am asking them to step away from being victims and start being people, is spot on. In a sense, they are doing what they are accusing me of doing: not budging from a narrow view of the world that doesn’t center on themselves. They do make good points that get me thinking, but I can see I won’t get through.

I will say that still over 90% are positive – from the responses and from the links all over the web. I fact, the response has been moving to me.

I guess you know me better than they do and so can listen to what I say in that context. Isn’t that what this whole discussion is all about? I appreciate that.

You seem to bend over backwards to try to look at things from the other person’s perspective. Dr. Rob, I appreciate so much the viewpoint you present in your blog. Sometimes people just see what they want to see, instead of what’s really there.

I especially loved your thought of wondering if the problem was yourself if someone had a number of bad doctor experiences. I totally agree on that. I can see having one or two bad doctor experiences (like when I had cancer and at first was told to “buy a new thermometer” because the one doctor couldn’t figure out my fevers…should I buy one for the office too since when the nurse took my temp I also had a fever? Not going back to him ever!) but too many similar experiences and I would definitely think the problem was me and wonder how I could change.

I sometimes find it frustrating to KNOW something is wrong and have it kind of brushed off by doctors. I understand that some patients are complainers and luckily I have been with my doctors long enough now that when I say something is wrong, they know it is. I think that is really the key, building up relationships so the doctor knows you and trusts you and you know and trust the doctor as well. Obviously my doctor is the boss and knows more than me, that is why I go to them. Most of my doctors are kind of far away. I didn’t plan it that way and it is a pain but I would never switch because they are so wonderful.

Asking questions.
Knowing something.
Showing them proof that you do have something.
Questioning anything they say.
Reminding them of something they’ve forgotten.

To some doctors, the following is “respect”:

Never disagreeing with them.
Continuing a treatment as they demand even if it’s endangering your life.
Continuing a treatment even though it’s giving your serious burns.

If I “Respected” some doctors, I’d be -dead-.

Avoid jerks and don’t doctor-hop clash.

If it takes ten doctors to find a good doctor? Then it takes that many, meanwhile you’re accumulating bad reports on you from bad doctors, which means if you do find a good doctor, he might not want to treat you based on what bad doctors have said about you.

People were offended because the post came off very much as victim blaming, if we were only more timid, if only we played stupid, if only we behaved just as doctors demand, we’d get better treatment.

When in fact most of us only get diagnosed because we do push, because we do inform ourselves, because we refuse to put up with bad doctors and keep looking for a good one in a sea of bad ones.

If we followed Dr Rob’s “advice” most of us would still be languishing under the dubious care of terrible doctors, we wouldn’t be getting any help whatsoever, the rest would be -dead-.

It’s the medical training that needs to change, doctors need to learn that it’s okay to be human, they need to learn to work with their patients instead of trying to strong arm us, if we say something won’t work or are worried about something, bullying us doesn’t help yet that’s often what doctors resort to first.

We want to make our own decisions with input from doctors, we want the freedom to not have to fear poisoned medical files due to bad or pissy doctors who think that us getting sicker because they were wrong about what was wrong is some kind of crime!

We’re tired of doctors who treat us badly when they don’t know what’s wrong or when we don’t mirculously improve with no treatment. We’re tired of doctors who think we should run after them and dance to their tune in order for them to condescend to treat us like human beings rather than they often do treat us like.

We’re tired of doctors who give us nonsense lectures on subjects. Just because we haven’t gone to medical school doesn’t mean we’re too stupid to know when someone is talking baloney about basic biology.

A degree does not entitle someone automatically to respect, the guy who graduates dead last in his class is just as much a doctor as the one who graduated top. I’ve known doctors who couldn’t tell a scar and a wart apart, I’ve known head matron’s who misdiagnosed an injury despite the pain being in entirely the wrong area for the injury they diagnosed it as.

I respect a doctor when he shows me respect and builds upon that by backing up his qualification with good solid knowledge.

Dawn, the comments setting on this blog require pre-approval for new commentors. Sorry it took so long to pass this one; I have a life. Any future comments from you should now go up automatically (but sometimes WP does weird things, so no guarantees). I probably won’t have time to address your comment until Monday, but I’m not ignoring you ;)
There are currently two more comments from you sitting in moderation. Given the second, I thought perhaps you didn’t want the first to post. I’ll put them up if you want.

Apology accepted :)
The spam filter doesn’t catch everything, and so I moderate comments so that ads don’t show up here.

It sounds like you’ve had some really bad experiences with doctors, and I’m sorry about that. Really, I am.

In reality, we don’t live in a perfect world. We have to balance what we want against what we’re willing to do to get it.

An example is when I went to my PCP about headaches I’d been having. First I saw the NP. A few weeks later I returned for follow-up as she recommended. A couple months later I needed to go back, but when I called for the appointment, when the receptionist offered another appointment with the NP, I said, “I’d really prefer to see the doctor. I’d don’t mind waiting until there’s an available appointment.” I was polite, but said what I needed. I could have been seen that same day by the NP, but I waited a week to see the MD. Now, however, the default is that I see the MD – even for same-day stuff.

Back to that appt: the doctor looked at my HA calendar, he read the NP’s notes, we talked, and he prescribed a medicine that he thought would help and told me to come back in a month. I filled the rx, continued keeping the HA calendar, did some research, and kept my follow-up appointment. At that appointment I said that the med made me sleepy all.day.long. and showed my calendar illustrating zero impact on headaches. The doctor said stop taking med#1 and we’d try a different one. Sometimes beta blockers can be helpful in preventing migraines, so he wanted me to try one.

Except that I’d done some research. When he said, “beta blocker” I thought, “Wait a minute. Didn’t I read something about those?” I flipped open my notebook to check, and yes, I had read about them. I asked my doctor, “Aren’t beta blockers contra-indicated in people who have Raynauds?”

I wasn’t trying to be obnoxious or imply that he doesn’t know what he’s doing. Migraines are not uncommon in people who have Raynauds, and while beta blockers can help with the headaches, they can make things worse with the Raynauds symptoms. I just asked – I thought I was polite about it.

And my doctor sucked in his breath and looked really really really annoyed. He didn’t say anything – more like he was biting his tongue, deciding how to respond.

I thought about it, shrugged my shoulders, and said, “I can try it.” Beta blockers are perfectly appropriate for many people, and while they cause problems for some people with Raynauds, it doesn’t necessarily follow that they’ll cause problems for me. I’m more interested in long-term help from my doctor than proving what I know about one tiny little fraction of medicine.

Interestingly enough, after I said I’d try the beta blocker, my doctor continued to think about it for another minute and suggested a calcium-channel blocker instead. It seemed like my being willing to accept his expert judgement made him realize that I wasn’t making demands – I’d just done a little research about my conditions and was reminding him of something that he might have forgotten (or never knew in the first place since he can’t keep up on all the research about every condition). Which is a very long way of saying that I understand what you mean when you say that doctors aren’t always happy about it when you know something about how your ailment should be treated, ask questions, or remind them of something they’ve forgotten. I’ve seen it. But I’ve seen it work, too.

I could have gone to my appointment demanding a CCB. There’s really no need. My doctor isn’t my adversary. It would be irresponsible of him to take prescribing advice from me, and it’s his medical license on the line. My goal was to eliminate the headaches. I’m in this for the long haul, and if it takes a while to find the best treatment, I’m okay with that. Even the CCB was a shot in the dark.

You make some other points, too, that I’ll respond to, but I think I’ll turn the rest of my response into a couple separate posts.

At the same time, doctors should be prepared to answer questions, my current doctor if I were to ask a question like that, would either straight off suggest an alternative or he’d tell me why he felt the med was best.

It’s a good thing to ask questions because sometimes doctors may perscribe something automatically without thinking about how it might clash with other meds/any other conditions you have.

I’ve always been nice to my doctors, but some of the one’s I’ve run into really need to see a psychiatrist about their self esteem issues, especially the ones that need to be right the first time to the point where they’ll force patients to continue dangerous medicines/treatments which aren’t helping. Which is bad when you consider that the first treatment tried is not always necessarily the right one for many people.

I think both Rob and Dawn did a very good job of showing that it’s not an either/or situation. Each patient, and every doctor is different. Unfortunately, both sides need experience, and that often means a chronic illness, or worse. Part of me wants to be considered a compassionate patient (using the reap what you sow analogy), but a part of me wishes I had never met our brilliant surgeon……but we do what we need to do with mercy and grace, and accept that we are all trying to do our best with a bad situation.

I read Dr.Rob’s “Letter” post several days ago. I was very impressed by it, as well — he ‘s the kind of doctor we all want to have, and he’s realistic, too. As patients, we also need to be realistic.

I’ve been lucky so far. I’ve really had nothing to complain about regarding the care I get from my PCP and my rheumatologist. The other specialists I’ve been referred to over the last couple of years have also been kind people and excellent doctors.

I have had, in the past, though, a few bad experiences with doctors (PCPs) who rushed me through appointments, spoke little, couldn’t spare a smile, etc. And I was annoyed enough by that treatment that, after it happened two or three times, I fired them. No one deserves to be treated like a burden and a waste of time by a doctor, especially when they don’t GO to the doctor very often.

I try to treat everyone, including my doctors, the way I’d like to be treated myself. And while I can’t help but expect that my doctors will be able to cure what ails me, I’ve learned that they can’t always do that. We’re both human. What a revelation!

I think the patient’s experience with doctors depends on what ailment he has and whether he is talking to the appropriate doctor for what is wrong with him. Still, I haven’t found anyone who can explain to me what I learned about navigating the medical system on my own through trial and error.

I didn’t understand that medical schools typically limit the curriculum to teaching about a list of the most common illnesses. So if you present with symptoms outside of what the doctor was taught, right away you’re making the doctor feel bad because you’re making him feel inept. That puts him on the defensive and right away the two of you are off to a bad start. Simply a case of wrong doctor for the patient’s illness.

So what I ended up having to do was give myself a medical education and self-diagnose, so I knew which doctors and tests I needed. Then I had to research which doctors patients liked best for that health problem and figure out a way to make the doctor think it was his idea that I had that health malady in order to get treatment.

I learned this after years of suffering severe pain caused by a prolonged, undiagnosed intussusception (an intestinal partial blockage) that caused multiple infections (also undiagnosed), multiple “itises” from resultant autoimmune disease and several “osis” conditions like atherosclerosis from the rampant inflammation topped off with some “isms” like hypothyroidism. I even lost some of my teeth in the process of figuring out how to find the “right” doctor for the “ailment” and how to get him or her to feel good about treating me.

The bad news is that once you’ve gone through the equivalent of Chinese torture, it’s not easy to forgive those doctors who looked you squarely in the eye while you were in severe pain and said “but I don’t see anything.” I know it does no good to carry a chip on my shoulder, particularly when the doctor was just telling the patient the truth. He or she wasn’t seeing anything because he or she had no clue of what to look for. You’ll never find what you don’t know what it is that you’re looking for.

The good news is that once you find the right doctor, it’s a heavenly match — so effortless to have that doctor validates your ailment as if the diagnosis was written on your forehead in neon.

Unfortunately, I was a slow learner and my condition had deteriorated to the point that I was disabled by the time I figured things out. Had someone explained to me that doctors sub-sub-specialize within their respective fields, it would have been easier. I wouldn’t have gone in believing that doctors would know about everything related to that field and becoming frustrated when the doctors tried to bs to cover up their lack of knowledge and save face.

It would be easier if doctors would level with idiotic doctor-as-deist myth believers like I was and tell patients that their ailment is outside of his knowledge base rather than call the patient a head case to his face. Not very professional in my opinion. Actually, rather rude.

Yet, many doctors I saw couldn’t bear to admit to themselves that they’d possibly be mistaken in their diagnosis.

I shouldn’t take it personally, even though the experience cost me everything I had — my health, my relationships, my job and all of my money.

It’s getting easier now that I’m seeing some improvement in my health and found a handful of extremely knowledgable doctors truly dedicated to helping their patients get well — even if it is in the midst of losing my home through foreclosure. Thank the Lord for Social Security Disability Insurance and Medicare. It’s not much, but it gets me the basics.

One last thing. It’s nearly impossible for those who haven’t undergone chronic illness to fathom what it is like for someone with chronic disease. There’s no experiential reference to pull from. Well the same goes for those who have never been in severe pain for years without pain medication with a definitive physiological illness only to be told over and over by “professional” doctors that “it’s all in your head,” that “you’re thinking yourself ill.” It’s kind of like giving advice to a soldier coming back from combat with post traumatic stress syndrome being told to just forget about the experience and act normal without the benefit of treatment.

Your comment would support those who want a type of outcome based medicine with bonuses attached to success in diagnosis and treatment. I think this may be a coming trend for care, because sometimes the assembly line of patients starts to look the same to a doctor and they tune out to lesser details that could lead to true healing.

Our friend went to medical school and felt completely unprepared to treat anyone. He claims it was mostly multiple choice tests that he could remember then forget pretty easily. After reading Atul Gawande’s book about the mistakes residents make while trying to gain experience I panicked and e-mailed our doctor (July is supposedly the month of horrors as new interns are integrated). Our doctor wrote a nice letter back, so I surrendered [which is different from supporting]). That said, I think medical schools are trying to train their students to treat patients on an emotional level and not just a physical level (and many hospitals are following this method). I, personally, find doctors under 45 years old to be more personable and informed. They have the experience, they have raised children (which is great training for a doctor to understand a parent), and usually the knowledge. It’s not an iron-clad formula though because that doesn’t seem to exist when people are treating people.

IMHO, if you REALLY want to improve or manage well a chronic condition AVOID the doctors (even the good ones are made impotent by bad health systems – if you put good doctors in a bad system the system always wins).

Find online or local support group/s (that consist of people who suffer from similar/same condition); be vigilant in avoiding taking advice from nutters/wannabe-gurus (who are especially prolific in online support groups).

Exactly how long does the good Dr Rob think it’s OK to “string-along” a patient (i.e. how many years of wasted life is acceptable to Dr Rob, who advises, ‘don’t bring me more than one or two problems at a time because my poor brain can’t manage any more thinking’).

Chronic conditions that require ongoing medical care and investigation are chronic precisely because they are complex and puzzling. In the book Better – A surgeon’s notes on performance, Atul Gawande identifies ‘constant surveillance’ and ‘attention to detail’ (when combined with good management of time) as the features that distinguish excellence from mediocrity (in clinical medicine).

A chronically disabled patient might for 10, 20 years (or more):
~ diligently travel to the clinic (bringing only one or two problems at a time),
~ endure the disrespect of the waiting room “experience” without comment,
~ watch other’s lives ‘move on’ (babies born, children grow, holidays enjoyed, homes renovated, parties attended …),
~ while the patient remains trapped in their invisible prison that no one (especially the medical profession) seems capable of seeing, or understanding; or perhaps it’s just that no one cares.

How does a doctor look these long-suffering (one-problem-at-a-time) patients in the eye and not feel in part responsible for their wasted years?

The system will never change unless doctors and patients unite to change it.